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While looking for something that references what you're talking about I found this wonderful article that I know we've talked about in these forums before. If you think it detracts from your original topic too much I will gladly create a new thread for this.

Mild brain impairment caused by HIV has become “a silent epidemic” that needs better screening tools and more research to effectively address it, said Dr. Victor Valcour, who presented on HIV and brain injury at a session on long-term complications of HIV and antiretroviral therapy at the 2010 International AIDS Conference.

“The rate of [brain] impairment in patients with HIV is much, much higher” than in the general population, said Dr. Valcour, a physician at the Memory and Aging Center at the University of California in San Francisco, where he is also an Associate Professor in geriatric medicine and neurology.

“About half of patients who have HIV will have abnormal [brain] testing,” he said.

HIV is known to cause damage to the brain that can lead to impairment or, in severe cases, dementia. Brain impairment can involve loss of memory, motor skills, and concentration abilities, as well as behavioral changes and general mental slowness.

Before the advent of highly active antiretroviral therapy (HAART), HIV-associated dementia – the most severe form of HIV-related brain impairment – was fairly common, affecting up to half of people who died of AIDS.

Today, according to Dr. Valcour, “HIV-associated dementia is now quite rare.” However, rates of milder forms of brain impairment have not decreased with HAART and still affect around half of people with HIV.

In many cases, patients may not even realize their brains have been affected, since symptoms may be unnoticeable without specialized testing.

Although the cause of HIV-related brain impairment is not yet known, Dr. Valcour argued that it is an active disease process that continues even when patients are on HAART. This is in contrast to the theory that the impairment is a delayed consequence of damage from earlier in the infection, before treatment begins.

More specifically, Dr. Valcour believes the problem has to do with latent HIV – HIV that remains hidden within the body and is not eliminated by antiretrovirals. Patients who get dementia appear to have higher levels of this latent HIV in their system, even after years of HAART.

The high levels of latent HIV mean that some cells, including immune cells that cross into the brain, still have HIV in them, which may be causing some of the damage to brain cells.

“I think our work is cut out for us to try to figure out ways in which we can attack these [latent HIV] reservoirs and try to clear them, perhaps causing some benefit for [brain] impairment,” said Dr. Valcour.

“We are inadequately treating [brain impairment] with the existing regimens that we have,” he added.

He pointed out that not all antiretroviral drugs are equally effective at reaching HIV in the brain.

“The higher the brain penetration effectiveness of your overall antiretroviral regimen, the more likely you are to have undetectable virus in your CSF [cerebrospinal fluid],” he said. CSF is the fluid that surrounds the brain and spinal cord.

Dr. Valcour finished his talk by stating that work still needs to be done to improve screening and identification of patients affected by brain impairment.

The current specialized tests for determining brain impairment are too complicated and time-consuming to do for everyone, he said, so better screening tools are needed to effectively diagnose minor brain impairment in people with HIV. Ideally, everyone with HIV would then get tested for brain problems.

“If 50 percent of patients who came into your clinic could have a disease, wouldn’t you want to screen everyone? It is a feasibility issue. I think we need to figure out a way to make this work,” he said.

Dr. Valcour also stressed the importance of remaining fit and healthy.

“Things that you as patients can do and you as doctors can recommend: stop smoking, get exercise, treat diseases when they present, [and] be very aggressive about treating depression and psychiatric illness,” he said.

Sorry to preempt but I thought it would be best to put it up for those who like to read it immediately.

Off topic a bit but I felt that HIV may have invaded my brain around 1998, but I did an heavy H2O2 enema and it went away. (note: I am not recommended this for it can be dangerous) I am not saying that was the cure but in my mind it was helpful for I had not that memory issue since. At the time, I had lost short-term memory and I had panic for I did not know what was happening. Then I remembered, with my bf at the time, that some obscured doctor recommended H2O2 or oxygen the blood a.k.a Ozone cure to stop the HIV or slow it down. I am not sure it actually cured HIV or killed it but I decided to put a table spoon hydrogen peroxide of it in a enema solution and of course it did not cure me, but I felt that it held it at bay for some time. I had remembered feeling a fuzzing in my head as if the H2O2 in the brain barrier was burning off the infection. Again, the doc was ostracised and belittled for his cure-all but I felt that having it in my system helped in the body's defence of the infection. You can do a search for it under "Ozone Cure."

Interesting. And also terrifying. I wonder how the doc from the article listed would explain the fact that researchers more consistently find a correllation between cognitive issues and nadir cd4 than viral load.

My understanding is that CSF viral load is poorly correllated with cognitive issues, and is most pronounced in people who are not completely undetectable. Does anyone else have any other input on the "mass of HIV cells" in the brain? Do they mean "mass of white blood cells" which are latently infected with HIV? Does anyone have any more input?

I'm currently dealing with this issue. I have a mass that my doctors feel is a pocket of dead cells that attached and wasn't able to eradicate from my body. I have surgery Dec 7th and hope I can provide more info. I'm starting to wonder if this is more common than previously thought. Mine was found because of routine testing following a bout with Cryptococcal Meningitis. I was almost completely blind before being diagnosed and treated. I continued to have vision issues and headaches so my doctor was actually looking for damage caused by this fungus when they discovered this mass.

« Last Edit: October 29, 2010, 07:51:31 PM by wolfter »

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My Dr and I have been working on this same problem. When I started meds I was on Truvada, Reyataz and Norvir and it's a great combo fighting the virus and upping my tcells. But as the aritcle points out...

Quote

... Although the cause of HIV-related brain impairment is not yet known, Dr. Valcour argued that it is an active disease process that continues even when patients are on HAART.

The high levels of latent HIV mean that some cells, including immune cells that cross into the brain, still have HIV in them, which may be causing some of the damage to brain cells....

..."We are inadequately treating [brain impairment] with the existing regimens that we have," he added.

He pointed out that not all antiretroviral drugs are equally effective at reaching HIV in the brain.

The higher the brain penetration effectiveness of your overall antiretroviral regimen, the more likely you are to have undetectable virus in your CSF [cerebrospinal fluid], he said. CSF is the fluid that surrounds the brain and spinal cord.

Like I said, my Dr and I have been discussing this exact thing for the last 9 months. She's been doing her homework and the other day she sent me an email asking me to drop my current HAART and start up with Prezista, Norvir and Trizivir. Our object is to cross over that brain barrier. As our game plan proceeds I'll be certain to keep you all in the loop.

I need to do more research, but I believe AZT was one of the drugs that did cross the blood/brain barrier effectively.

If it became necessary to switch back to Combivir, or to start Trizivir, to better preserve my mental functioning, I would then be risking additional lipohypertrophy.

Hmmm, beauty or brains, what a choice. Oh, wait, I forgot, I'm more than 50, so I'm already dead by gay standards anyway.

I guess I would choose brains.

Something to think about.

HUGS,

Mark

Cripes, wasn't AZT originally manufactured for cancer research, like, 60 years ago or something? Does it say something about HIV pharmaceutical research, that every time we make an advance, we resurrect this compound that was designed for something completely different?

And Robert, please do keep us updated on your progress! Are you currently experiencing cognitive issues that are related to HIV? Did your doc check your viral load in your spinal fluid?

AZT is still a brutally effective anti-HIV agent, the problem is it is also extremely toxic. Although in all fairness when it is not described as monotherapy and in massive doses the effects are much more tolerable.

...Are you currently experiencing cognitive issues that are related to HIV? Did your doc check your viral load in your spinal fluid?

Oh I've been complaining about my memory lapses for the last 7 years. It's only gotten worse. Day and night. Night and day. It doesn't matter. Night is the worst. I wake up at 2 or 3 in the morning and I have absolutely no idea where I am. Believe me, it's not a good feeling.

I'm sure the Dr has checked my spinal fluid. She's done evereything else under the sun. I just don't remember.

I'm a few years older than Mark (like 10) and though I'm still concerned about my physical appearance. I'd give anything to get a better grasp on simple memory (short and longterm). Anything else, like cognitive reasoning, would be a bonus.

What about studies that indicate high blood/brain barrier penetration induce neurological complciations and sometimes make cognitive decline worse? EVERYONE seems to be jumping on penetrating the blood/brain barrier, but can anyone name any solid evidence in favor of this?

I've read studies indicating that viral load has no relationship with cognitive decline. From everything I've read, the most common relationship that is found is with nadir cd4, although this isn't an outstanding correllation.

One of the things I've personally noted in favor of "blood-brain barrier" penetration is that a lot of long termers who were on monotherapy seem to hold up better mentally than the rest of us. Whether this is because of the drugs that were used, or because you've all got a degree of natural immunity, is probably going to be difficult to discern. I can think of half a dozen reasons why the current fad for a Blood Brain penetrating combo might not be the ideal in treating neurocognitive issues.

Philly, my understanding is that you battled both high viral load and low cd4 for a long time before combo therapy. Is this correct? If so, you're quite reassuring to me. It seems like so many of the people with a place at the table in HIV issues are controllers, nonprogressors or slow-progressors. It makes it difficult to find reassurance.

Honestly I think a lot of HIV just boils down to genetics. Some people weather the storm better than others and the meds help with that battle. You've just rolled the dice and only time will tell how it turns out, although cognitive decline and eventual death awaits us all in the end. Sorry to be morbid.

Honestly I think a lot of HIV just boils down to genetics. Some people weather the storm better than others and the meds help with that battle. You've just rolled the dice and only time will tell how it turns out, although cognitive decline and eventual death awaits us all in the end. Sorry to be morbid.

I've read studies indicating that viral load has no relationship with cognitive decline. ....... I can think of half a dozen reasons why the current fad for a Blood Brain penetrating combo might not be the ideal in treating neurocognitive issues. ...

There are a lot of on going debates...

1 - the neurocognitive 'decline' is something that not all researchers agree upon.2 - economical impact: some people do need to get on disability: it is harder is some countries than others (therefore alarming reports may help HIVers in some countries)3 - relationship between penetration/ CNS VL / risk for disorders, etc...4 - the meds themselves can affect the brains

The rational being that, if, as established by Dr Siliciano, there is NO viral replication in the peripheral blood for people who are UDs for a while and under efficient medication,there is no evidence that viral replication does not occur elsewhere...

The 'last reservoir concept' (remember the Alamo) is still being investigated.

I would 'think' that the brains or guts would be an ideal place for viral replication.

In other words, your blood and all other organs could very well be under potent tri-therapy, while the brains , because isolated, could be under a de-facto monotherapy.

which is why, (and this is merely an opinion, I do not have much to back this up), I am a bit in favor of brains penetrating meds.

I admit it is kind of a bet, here.

I should thank wtfimpoz for bringing this subject up. Patient experience is so important in these matters...

I'm currently dealing with this issue. I have a mass that my doctors feel is a pocket of dead cells that attached and wasn't able to eradicate from my body. I have surgery Dec 7th and hope I can provide more info. I'm starting to wonder if this is more common than previously thought. Mine was found because of routine testing following a bout with Cryptococcal Meningitis. I was almost completely blind before being diagnosed and treated. I continued to have vision issues and headaches so my doctor was actually looking for damage caused by this fungus when they discovered this mass.

I wish you luck in the surgury and God Bless. (sorry for being religious but I was rasied that way)

Oh I've been complaining about my memory lapses for the last 7 years. It's only gotten worse. Day and night. Night and day. It doesn't matter. Night is the worst. I wake up at 2 or 3 in the morning and I have absolutely no idea where I am. Believe me, it's not a good feeling.

I'm sure the Dr has checked my spinal fluid. She's done evereything else under the sun. I just don't remember.

robert

I remember a time that when I would just wake up I would immediately remember things but now it takes time for me to remember my name . I do beleive it is more than old age and that HIV is involved.

I had a high viral load for 18 years yet haven't had any cognitive decline to speak of. Clearly I am an exceptional being.

I was going to say something coy but maybe you have something that protects you from this condition. As we know, not everyone can fight HIV effectively and now apparently some of us survivors, like yourself, may have super protection.

Unedetectable doesn't mean the virus has been eradicated from the blood, it just means that conventional tests don't pick it up. Usually, it can be found in small quantities with more sensitive tests. My understanding is that the brain is SUSPECTED as a hiding place, though not proven. From what I have read, "The Berlin Patient" has not been shown to have ANY detectable virus in either his blood or CSF despite use of the most sensitive tests. To me, this indicates that "the resevoir" is in fact blood based. Does anyone have any response to this?

My understanding is that my current meds cross the brain border, but sometimes the dead cells are unable to cross back over. Maybe this is over-simplified, but I like it that way to help me understand.

My current combo is; Intelence, Truvada and Isentress.

I'll try to remember to have this discussion for my ID doctor and let everybody know what he says.

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So far, having latest information from IOCB AS, CR, scientist are reworking Viread to its second generation, to be less toxic and more flexible, integrating last antibodies from LTS. Trial is to be launched for testing in few years via the funding company - Viread license holder.

So far, having latest information from IOCB AS, CR, scientist are reworking Viread to its second generation, to be less toxic and more flexible, integrating last antibodies from LTS. Trial is to be launched for testing in few years via the funding company - Viread license holder.

The "Living With..." forum is restricted to people living with HIV, or to people who have immediate friends or family members who are HIV-positive. Even for folks with HIV-positive friends or family, we generally prefer their posts be kept only to those issues that are currently and specifically affecting their friend or family member. Here are the guidelines. Please read and follow them:

Undetectable doesn't mean the virus has been eradicated from the blood,...From what I have read, "The Berlin Patient" has not been shown to have ANY detectable virus in either his blood or CSF despite use of the most sensitive tests. To me, this indicates that "the reservoir" is in fact blood based. Does anyone have any response to this?

Hi,

I did not say that there is no remaining virus, I said , that , under the conditions described here:

by Dr Siliciano, that there is no replication in the blood (or if so, too little to create mutations and be, per se , the cause for blips)

No replication is not exactly equivalent to no VL, it means that if some virus gets released by some dying infected 'memory' cell, the amount of virus released and the potency of melds do not allow the virus to infect a new cell (under the condition that this cell has a proper shield : read : load of potent AR Vs)

Concerning the Berlin patient, i did read "The Berlin Patient" has not been shown to have ANY detectable virus in his BLOOD.I do not recall reading that he has none in the brains.

I state this from memory, which, as this is the subject of your thread, could be impaired ;-)

Also, I would be cautious about the difference between virus load in plasma (released from cells) as opposed to viral load within living cells

We read many things... But upon reading what I read at the time, it strikes me that they were reporting about is VL and CD4 in peripheral blood.

In my understanding, they have made it possible to put some chewing gum in the lock by which the virus enters CD4s

That is because all of his CD4s are all new and have a jammed lock. But what about the cells that have not been rejuvenated.

The search for the reservoirs is on going research, and I could be out dated.

Some cells in the brains (neurons) (as well as adipocyte's - belly fat cells) have a very low (if not nihil) rotation rate

pretty much like the latent, dormant CD4s...

But some cells in the brains (astrocytes) do have a rotation rate

Being quite new to such a complex science, my opinions may be false and please excuse me in advance if this is the case.

The Berlin patient as well as those adherent to successful meds are safe from Immune Deficiency (I have skipped the A and the S on purpose)

This does not mean that they are safe from other nasties caused by the remaining latent virus. Nor do we know exactly the extent of the 'nasties'

HIV is not the only virus that (most of us) we carry. And for some of these, the nasties are so minor that we even do not notice.

With regards to brains cells (and semen) what seems important to me is not the plasma viral load, but the intra cellular viral load.

(as a proof, while it may be considered safe to have unprotected sex among 2 UD partners, (who will not reinfect each other) it is still not possible to conceive a child (by the natural means) without the risk of virus transmition to the egg.

This is an interesting thread, but I doubt that we can get to the bottom of it.

I posted on a post on the mental health regarding something similar to this.

Two years ago I had brain surgery, before surgery they thought I had a tumor so they did surgery on me which was hell, the mass they removed had attached itself to my skull and grown in my brian. They took out a part of my skull and went into the brain and removed the whole mass. The Neuro. surgeion replaced the part of skull he removed with wiremesh.

After about two weeks they got the results back and it wasnt cancer. The whole mass was HIV cells, the cells were not dead but very active. So as a result of this I am now on a study program. For the next 6 months after surgery they kept the mass and studied it and what ever else they did with it. The ID Doc and Neuro. surgeon worked very closely together and still do with me.

After 6 months of studing thhe mass. The HIV cells had no signs of any attack form my meds. It seems these cells were unface by any meds. I am still going thur the study and gert MRI of the brain every 6 months. The last MRI scan showed other growing mass, but I am not going to go thur the surgery again it was to much and I almost didnt make it.

My ID doctor is very interested in these cells that are invading my brain and he thinks after consulting with other ID doctors in other parts of the world that HIV cells my be invading various organs in the body and the current HIV meds are not affecting these cells. As I go thourgh this and get to know more I will let you know.

I posted on a post on the mental health regarding something similar to this.

Two years ago I had brain surgery, before surgery they thought I had a tumor so they did surgery on me which was hell, the mass they removed had attached itself to my skull and grown in my brian. They took out a part of my skull and went into the brain and removed the whole mass. The Neuro. surgeion replaced the part of skull he removed with wiremesh.

After about two weeks they got the results back and it wasnt cancer. The whole mass was HIV cells, the cells were not dead but very active. So as a result of this I am now on a study program. For the next 6 months after surgery they kept the mass and studied it and what ever else they did with it. The ID Doc and Neuro. surgeon worked very closely together and still do with me.

After 6 months of studing thhe mass. The HIV cells had no signs of any attack form my meds. It seems these cells were unface by any meds. I am still going thur the study and gert MRI of the brain every 6 months. The last MRI scan showed other growing mass, but I am not going to go thur the surgery again it was to much and I almost didnt make it.

My ID doctor is very interested in these cells that are invading my brain and he thinks after consulting with other ID doctors in other parts of the world that HIV cells my be invading various organs in the body and the current HIV meds are not affecting these cells. As I go thourgh this and get to know more I will let you know.

Do you mind discussing what issues you were having that caused you to seek treatment and get a brain scan? Did they want to remove it only because it could be cancer? If you knew it wasn't cancer, what is the benefit of removing the mass of cells? Did removing them correct cognitive or other issues?

I was having very bad headaches and severe depression the worst the docs said they have ever seen. So they did the MRI. They did blood test and after everything they thought it was a tumor that could be cancer.

I had no choice it had to come out. The headaches went from every day to non stop. The white of my eyes turned red from the trama of the headaches being so severe. I was eating pain meds like they were sweet tarts. I had no choice but to have it taken out. Once the surgery was done the doctor came out and told my family and friends that he was almost postive it wasnt cancer, which he thought it was before surgery. He stated he has never seen anything like it. It was not a tumor it, so he sent it off and contacted my ID doc.

When the results came back and the mass compose of HIV cells my ID doc was sorta dumb founded (he is a very good doctor) so he contacted all kinds of other specialist and also alot of other ID doctors both in this country and others.

He ask if I would go into a study, which I am still in, He stated that they needed to know more about this. So has of today, I have 5 ID doctors I see and I have to keep journeys and all kinds of stuff. While the headaches are 100% better, the depression is the same. I am dealing with one doctor from germany that is very confident that this is awhole another side of HIV which he says seems to be popping up quite a bit in other people that have HIV and most doctors are not familar with this. He also says that these conditions seems to only be taking place in patients that cd4 was under 100 and then the cd4 count went really high over a very short period of time. I was at 55 and went up to 1000 in about 2 months. The head aches did not start until I was healty (so I thought), High cd4,undectable and thought wow I have made it.

The doctors have dectected HIV cells in my liver,brain,kidneys. I am on a boat load of meds. other meds then just HIV meds. From the way I know right now my ID docs seem concern that the HIV meds are not effecting the cells once they have invaded a organ. HIV meds work great on the cells in the blood but in the organs it does not phase them. One of the ID docs think that the possiblity of the cells in the organs actually taking over while the meds knock out the cells in the blood. As of right now no medications show signs of affecting the HIV cells in the organs. But I am going on some new kind of med all the time. I go to one of my ID docs next week.

Now after all of that being said, I feel as well as one can. I just have to watch myself and not let myself get run down and take care, no drinking,smoking,or drugs. Right now while my head hurts from time to time and I forget stuff just like everyone else my problem seems to be my liver. It isnt working right and my ammionia levels build up and I get very sick. They want to know why my liver is damaged, I wasnt a drinker before nor after,I dont have any of the various heps A>B>C, nor ever been exposed to them the test all came back negitive for those. So now my question is, have the HIV invaded my liver and damaged it like my brain.

This reply by Nevergivingup left me speechless.I am so sorry of all the things going on with you.

But what you are saying is so serious , it has a lot of implications for all of us.

Nevergivingup what do you mean by HIV Cells, HIV is a virus, what are you talking about HIV cells in your brain or liver? Is it some kind of tumor with HIV virus attached to it?How can they say it is HIV cells, if the HIV virus can only be seen with very advance electron microscope ?, did they use this microscope to watch some type of cell of a tumor and found HIV virus attached to it ?

I am just trying to make sense of the explanation you gave, and is very strange.In my case my CD went to 48 , before I started treatment, and I am not getting them backs as fast as you did , as it is also very out of the normal response. Depression is an issue with me, and I think its HIV related sometimes. My PS Dr. tells me is part both inherited, and my lifestyle.

Wish you well , and I don't doubt you at all, just wanting to make some sense out of your very unusual case.

The mass was removed out of my head so I am sure that they did everything possible to determine what it was. They studied the mass for 6 months. And determine that it was made up of hiv cells.

My liver they took a Biopsy to see why it is damaged. I havent gotten any results back yet from that. I am just wondering if its not the same thing that was going on in my head. There is a article that I was given from my ID doc and I will try to find it. But it is a study of HIV cells invading various organs in the body. I dont drink and never have I was always a preppy boy-lol, no drugs not even pot,they thought at first I had hep but all the hep a,b,c test all came back clean so now we are moving on to the next steps. Something is making my liver not work probably and as also damaged it to the point where my ammonia levels build up and I have to be admitted to the hospital because I become very sick but it becomes very dangerous.

As of right now everything is being study so I have no diffent answers to anything. I just know I told my ID doctor that I feel like a rat under the microscope.

The mass was removed out of my head so I am sure that they did everything possible to determine what it was. They studied the mass for 6 months. And determine that it was made up of hiv cells.

My liver they took a Biopsy to see why it is damaged. I havent gotten any results back yet from that. I am just wondering if its not the same thing that was going on in my head. There is a article that I was given from my ID doc and I will try to find it. But it is a study of HIV cells invading various organs in the body. I dont drink and never have I was always a preppy boy-lol, no drugs not even pot,they thought at first I had hep but all the hep a,b,c test all came back clean so now we are moving on to the next steps. Something is making my liver not work probably and as also damaged it to the point where my ammonia levels build up and I have to be admitted to the hospital because I become very sick but it becomes very dangerous.

As of right now everything is being study so I have no diffent answers to anything. I just know I told my ID doctor that I feel like a rat under the microscope.

Thank you for the detailed info. Man, you've been through a lot. I've read things about whether starting meds early would prevent damage to the brain and other organs. I've also read that the damage is probably done soon after infection. So, it does leave me wondering whether starting meds sooner would prevent damage to organs. Does anyone have any better info on whether starting meds sooner may prevent stuff like this? Or, whether the damage (if there is damage) is already done soon after infection?

Hey Wolfter and Nevergivingup,Thanks for sharing with us. You have both been threw alot. At the same time, you both sound very positive and strong and hopeful. I'm honored to be in the same support group with you guys. I feel like I am a part of something great!

This is a very interesting thread because I have been worried about neurocognitive issues since I had several periods of motor control problems with my hand, once about 8 months before being diagnosed and once about 5 months after starting ART (Truvada, Prezista, Norvir).

I was wondering if Nevergivingup or the other posters here experienced motor issues as part of their symptoms? Things seem fine for me now, the hand problem seems to have gone away and otherwise I don't think I have experienced confusion or headaches or the other symptoms that have been discussed. I mentioned my hand control problem to my doctor and she didn't seem to be concerned but I am worried it is something that should be checked into further although if it was part of the neurocognitive issue I am not sure what they could do about it, just hoping the problem doesn't come back!